Pernicious Anaemia Society
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With normal levels of b12 can you still be deficient

Hi guys

I’ve had a few months of turmoil, I’ve had a numb tingling patch of skin on my back for about 18 months that is progressively getting worse, a few months ago I’ve been developing many other symptoms such as excessive pins and needles, numbness in arms, lack of fine motor skills, brain fog, tingling on tip of tongue, now it’s a struggle to even lift my left arm, my worry is that it’s motor neurones and as my symptoms have progressed this has brought on anxiety and depression, I had blood tests resulting in low folate but b12 levels are normal 420, I seem to have many symptoms of b12 deficiency but doctor reassured me this is normal and of no concern to him, I am taking folic acid, and I’m on propanalol and anti depressants, I’m awaiting a neurology referral but am suffering extreme anxiety over mnd and the 16 week wait is going to tip me over the edge before then, holding on to the thought that it could be a b12 deficiency is the only thing keeping me going, could my levels of b12 be normal yet still deficient, and has anyone ever gone private to investigate this further.

Thank you

Lawla

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Hi Lawla81

The serum B12 test only measures what is swirling around in your bloodstream not what is happening at cell level.

You could always ask for an MMA test. Methylmalonic acid is a chemical used up in one of the cellular reactions mediated by B12. If there's not enough B12 in the cell then MMA levels will rise. If they're not high then it means your cellular levels of B12 are OK. High levels of plasma MMA (>0.75umol/L0 almost invariably indicate cobamalin deficiency.

Whilst your B12 looks to be "Normal" (I hate that word) The British Society for Haematology guidelines say on the Diagnosis of B12 and Folate Deficiency "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment".

google.co.uk/url?sa=t&rct=j...

Symptoms of B12 deficiency tend to develop slowly and may not be recognised immediately. As the condition worsens, common symptoms include:

Weakness and fatigue

Light-headedness and dizziness

Palpitations and rapid heartbeat

Shortness of breath

A sore tongue that has a red, beefy appearance

Nausea or poor appetite

Weight loss

Diarrhoea

Yellowish tinge to the skin and eyes

If low levels of B12 remain for a long time, the condition also can lead to irreversible damage to nerve cells, which can cause the following symptoms:

Numbness and tingling in the hands and feet

Difficulty walking

Muscle weakness

Irritability

Memory loss

Dementia

Depression

Psychosis

Symptoms of a folate deficiency can include - (have any of these improved since you started supplementation?):

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

I am not a medically trained person but I've had Pernicious Anaemia (a form of B12 deficiency) for more than 46 years.

I wish you well.

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That's very informative! thanks 👍

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Thank you so much for reply, I think I may have to go private for MMA test as I’m sure doctor won’t entertain it, I do have almost all of those symptoms of b12 but understand they cross over with folate deficiency symptoms but worry the folic acid I’m taking may mask some of the b12 symptoms if it’s that I have too, sorry you’ve lived with it for so long must be awful 😞

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I was initially given two years to live as a 30 year old unless I either ate raw liver three time a day or had B12 injections for the rest of my life. I chose the injections and am still "clivealive" and coming up to 77. :)

Mind you, I am a man of many parts - not all of which are still working....

To my deafness I'mm accustomed

And my dentures are just fine

I can cope with my bi-focals

But how I miss my mind.....

I hope you find some answers soon

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Love it!! 😁

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it is possible (but low probability) that B12 is a problem at the levels you have. At those levels if B12 is involved it would probably be because you have a problem metabolising B12 efficiently and so need levels towards the top end of the normal range or may be just over.

You could try for MMA and homocysteine tests but suspect your GP won't be prepared to order these given the levels you have. These would come back high if you are B12 deficient at the cell level - but can be raised by other factors - folate deficiency in the case of homocysteine, and kidney problems in the case of MMA.

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Good fish oils can also help with depression, I think, and maybe vitamin D. Best wishes.

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It's hard to say from here. Now you have had a base line test you could try supplementing and see if you improve. If you are likely to have other tests, just hold off until these have been done so that it doesn't skew the results.

The good thing is that they are helping you and will care for you. Even bad health can be improved and they recognise that you need treatment.

Time forward seems ages but if you compare it to time already passed its not too bad. A few weeks is only a tiny percentage of your life and in 10 years time when you look back it will seem like a blink.

Good for you for realising the problems... and now work to get those problems put in perspective and under control. Write down good things each day and make sure you re read them and add to them.

First thing on the list - you have found that people here will help! x

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Thank you so much this is all so true and does put things into perspective, the anti depressants have numbed my anxiety so making the passage of time easier.

I am so grateful for everyone taking time out of their day to try and give me some reassurance I really do appreciate all the responses xxx

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At least from now on you are heading in the right direction and even when you come across other obstacles you will know its just a case of finding the way to get around them.

It's surprising the number of things that contribute to one's anxiety in addition to the B12, like folate and potassium and iron, on their own - and no doubt countless others that I don't know about. And things like thyroid troubles and similar too.

Some of the solution is fixing the problem and some it is managing it until you can!

Good luck! xxx

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Thank you ❤️

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